Hello, hello! Happy Tuesday!
We interrupt the regularly scheduled programming today here on Mix and Match Mama so that I can politely pull out my soapbox and step up for a minute. I had another fun post scheduled for today but have decided to put that one aside for the time being just to (hopefully) encourage and help any of you mamas or caretakers out there new to advocating for your kiddos’ health/medical/care/etc.
I am certainly not a medical professional or an expert in this field AT ALL, but I am a mom to four kids…and each one of them has been put under general anesthesia for at least one surgery or procedure and one little champion of mine…
…has had TWENTY THREE surgeries and been put under additional GA multiple other times for MRIs. So, I’m not an expert, but I am mom who would like to encourage some of you out there new on the journey with your kids who either have life long health issues, temporary health problems or maybe it’s even as simple as your kid has stitches from a cut or a broken arm (something not super, super serious)…DO NOT BE AFRAID TO ADVOCATE FOR YOUR KIDS.
I know, I know, I know, that sounds so simple and obvious, but when you’re “just a mom” and people with a whole lot of training, expertise, experience, knowledge, power and authority are telling you things, it can be super intimidating and easy (even for an Enneagram 8 like me!!) to stay quiet.
They’re the experts. They’re the authority. They’re the ones with all the knowledge AND THAT’S SO TRUE, but that’s YOUR KID, so do not ever be afraid to speak up, ask questions, make them slow down, take their time, explain more, answer more questions, show you that scan again, go over that option another time, give you a referral to another doctor…that’s YOUR KID, your mama instinct counts just as much as their degree.
Now, yesterday went fine. I absolutely love Ashby’s current team of doctors and everyone we dealt with yesterday was just precious, buuuuut I did have to put my foot down FOUR TIMES about an issue. I’ve realized over the years, that often lack of communication between the doctor and then other amazing people helping is *usually* our problem. Everyone is so sweet and kind, but if it’s not on their orders, they’re going to say no (understandable), but as a mom, if you know it should be on their orders, you have to press on. You can’t let that “no” stick just because you don’t want to rock the boat. You can lovingly, but with parental authority, push more until everyone is on the same page. That’s advocating. Your kiddo needs you to do that sometimes.
If you’re new to this sort of thing, here are my off the cuff pieces of advice for you (and please chime in other ladies out there who have experience in this too!):
1: Write down questions before you to your appointments, and then write down answers during the appointments as well as other notes. I like to do this on my phone. I do it that way because often, we’re out and about when Ashby will mention an issue/show me something on her arm/have a side effect that I want to address at our next appointment, so it’s easy for me to type it all in my phone.
2: Keep records of your kid’s medication and dosage amounts also on your phone. You might give them that pill twice a day and think you’ll never forget the name and dosage, but trust me, you get into an emergency situation/you’re overwhelmed by something else and you will forget when it’s pertinent for someone (an EMT, a different doctor, the pediatrician who doesn’t prescribe it, a hospital employee, etc) to know.
3: Create a relationship with your pharmacist. With Ashby’s medications, we have to use two different pharmacies, and I’ve gone out of my way to really get to know both pharmacists. I need to know them well and for them to know me so that we can both work together to make sure Ashby’s taking the right medicines (especially when we introduce other medications like maybe an antibiotic if she were to get strep, etc), make sure we don’t need to add or subtract from her dosage due to growth/side effects/lifestyle issues…whatever. I am on a first name basis with both and their partnership has been just as fundamental to Ashby’s well being as the medical doctors.
4: If something doesn’t seem right/feel right, speak up! Surgeries, MRIs, other scans, bloodwork, injections, things like that are very routine for certain people who administer them to kiddos all day long. I love that it’s routine to them because that means they’re probably really good at their job, buuuuut you know your kid and you were the one in the appointment with the actual doctor/surgeon, so if something seems off, don’t stay quiet about it. Ask questions, probe a bit deeper and if nothing else, you’ll probably get a ton of loving confirmation that will make you and your kiddo’s experience much better. Trust your gut.
5: Don’t be afraid to switch doctors. I love, love, love, LOVE Ashby’s team of doctors. They’re the most amazing people. That being said, when one of our beloved surgeons retired (after operating on Ashby TWENTY TIMES), we were sent to another doctor in the same field. We went to our first appointment, and she HIT THE PANIC BUTTON HARD. Here I am with Ashby for a “routine” introductory appointment with her new-to-us doctor, and what was supposed to be a “typical” 30 minute visit ended up being four hours of her trying to get Ashby in for emergency surgery. UM, WHAT? She was saying things about things no other doctor had ever said to me. She was talking about an ambulance coming to get us to take Ashby to another hospital so that we could get her into surgery that day. She was freaking out and freaking me out too. I told her she needed to give me a minute to call Ashby’s other doctors….a request she did not love…but I wasn’t about to send my kid into surgery for something no one else had ever mentioned. Fast forward about two hours and other doctors were like “holy cow, that’s a NO” annnnnnd at one point, someone called the retired doctor who called me on my cell phone (first time ever) and told me to take Ashby and walk out.
Needless to say, we asked for a new doctor and haven’t been back to this one 😉 .
If a doctor doesn’t feel right to you, what they’re saying doesn’t add up, you have questions that need answers…tell them to hold on a minute and catch your breath, mama. They might be 100% right, but this is your baby, so make sure you’re truly making this decision and not being told what to do. Perhaps your story isn’t as dramatic as ours, but if you just don’t love something about your situation and think you need a second opinion (no matter how silly or small it sounds in your head), get it. Get it.
6: Take a lot of photos and videos of your kid’s health issue. You would be amazed how often doctors thank me for showing them photos/videos of issues we are having at home that might not be presenting at the appointment. Over documenting is always better than under documenting.
Anyway, my two cents for your Tuesday. Like I said earlier, yesterday went really well! I don’t mind at all nicely (and firmly) reminding the sweet people who love these kids so much at the hospital that we had a different plan and if they could please double check, that would be great. It’s mostly about communication, y’all. If everyone communicates then your kiddo benefits.
I think advocating for your kid (whether medically or perhaps at their school, your church, your sports team, whatever!) is a learned skill. The very first time that Andrew, Ashby and I went to the hospital to meet with Ashby’s “team”, she was only two years old. We went into this conference room where 6 different surgeons and specialists sat around a table along with other people in the medical field who just wanted to listen, take notes and observe (as it’s rare to have a KTS patient) sat behind them. There we were…three people without a clue listening to experts discuss major health issues about our daughter. When I got in the car, I cried on the way home because I felt so overwhelmed. Over the years, I’ve taken really good notes, asked a lot of questions, had a lot of opportunities (unfortunately) to see this work great and not so great, made friends with people who had a vested interest in helping, did research and asked more questions. I’m not AT ALL as knowledgeable as them when I go into that room now, but I’ve learned to speak up. They’re all so sweet! They like it when I ask questions. They like explaining things and helping me better understand. They never mind! I just had to get over being intimidated and learn to speak up.
Whew.
That’s it.
Thank you for coming to my TED Talk 😉 . I’m sure I’m not doing this post justice, but coming right away from the hospital today, I just wanted to encourage you out there to advocate for your kiddos even when you’re intimidated. You’re their person. They need you to speak up.
Other mamas with ideas and tips, please share!
If you’re looking for something light to listen to today, The Bestie Breakdown has a new episode up! Enjoy! xx
Susan Jeffries says
Excellent advice that should be used for every member of your family, including kids, spouses, and parents. As a veteran nurse, I always tell patients to bring an advocate to the hospital. Especially in today’s world. Hospitals are short staffed and employees are overwhelmed. Things get missed, neglected, or there simply isn’t enough time or staff to meet everyone’s needs. Great advice today!
Erika Slaughter says
Great words, Shay! I’m so glad you shared. XO
Elizabeth Heinze says
Amen and amen! Thank you, Shay, for this post. As someone who has endured lots of medical stuff myself, as an adult mostly, I will just second every single word you wrote. I only add that all of this goes for you adults too. Trust your instincts. If you don’t want to be on that medication, speak up! If you don’t want them to take your gallbladder, speak up. Yes, they are experts in their field, but you are the expert on you! Pray for wisdom and courage. It is hard to argue with your medical team. You might have to make lifestyle changes you don’t want in order to avoid the medical procedure and you have to decide if it’s worth it or not, but ultimately, you are in charge, not them. Thank you again for this. It’s so important!
Karleigh Johnson says
I could not agree with this more. Sometimes advocating for your child is following your mama/parental instinct when you know something isn’t right. My toddler son was hospitalized for 7 days this past fall, and this was after we were in the ER and seen by our pediatrician twice. I’m a nurse practitioner and I worked in the pediatric ER for four years. Even with my experience, I couldn’t pinpoint what exactly was wrong with him, but I just knew that something was OFF despite everyone telling me he was fine. We pushed and pushed, and ended up with a serious diagnosis and a week long hospital stay. I cringe at the thought of what could’ve happened, had we not advocated for our baby boy. He is now a healthy, happy and thriving 20 month old. To this day, I tell myself “remember when you knew best? Follow that feeling, mama.” It helps me as a first time mom remember that I AM MOM, and I was given this natural maternal instinct for a reason. All loving mamas and parents have it. Never stop believing and following it. It will guide you! 💜
Mix and Match Mama says
Sending YOU so much love today! xx
Elspeth says
You go mama!!! Thinking i you and your family as you continue on this journey!
http://www.elspethsdaybyday.com
Danielle Piede says
God used you today Shay !!!! We have a little one with (thankfully) very minor health issues but they’re constant and recurring and I’m beginning to get very frustrated with her doctor. She’s only 17 months and my older one is only two and has had zero issues so this is the first time we’re in this position. Thank you for your words. I’m going to fight harder to get some answers here. I read every day but rarely comment ❤️
Mix and Match Mama says
You’ve got this, mama! You are her person and YOU know what’s best for your sweet baby. xx
Aja says
This might be my favorite post you’ve ever written. I am a HUGE fan of advocating for yourself/family members/your kids when it comes to medical issues. Yes, they have degrees but I live in this body or with this person. The stories I could tell girl…
Beth Knecht says
Oh, Shay! This hit me right in my gut this morning! You know our story with Graham – his pediatrician failing to follow protocol, him getting a bacterial infection that ate his stomach out for 7 months as he screamed in pain, going to 3 doctors who refused to believe he had the infection, yet was testing positive for it on every test they ran. Whew! That was so freaking hard – mentally and physically. As I work through this mess, my therapists have all said “Graham is so lucky to have you as a mom to advocate for him!” I’m still amazed they think that because I’m his mom and think that’s what moms do! I advocate for kids in my classroom on a daily basis and certainly am going to stand up for the baby who I prayed and prayed for! Like you mentioned, it is SO SO important that we stand up and speak out! I can’t imagine the babies who don’t have mamas who are willing to put their foot down and speak up for them. Oh that crushes my soul! Thank you for this today! 🤍
Beth Knecht says
I listened to an awesome podcast episode today from Christy Wright’s podcast – Get Your Hopes Up. It was episode 14 – What to do When the Situation is Impossible. I think everyone could benefit from the advice and love within this episode.
Peyton Cline says
Thank you for sharing this post, as it is much needed in today’s world!! Also, as a pharmacist myself, thank you for including our profession in this post. Pharmacists play a big role in healthcare, and are often a “go-between” for patients and doctors. Glad you have two knowledgeable pharmacists in your corner!
Mix and Match Mama says
You are the glue!!! I value what you do so much. Ashby’s health and wellbeing relies just as much on you as the physicians.
Andrea says
One of the medications I’m on for my autoimmune diseases was recommended by my pharmacist! After relaying the conversation to my doctor, she prescribed it, and it has been SO helpful. Needless to say, I’m a big fan of the pharmacist’s role in health care!
Jordan says
Fellow pharmacist here jumping on to say exactly what you did!
Thank you Shay for including us pharmacists in Ashbys medical journey. I feel like I can speak for us all when I say thank you for trusting us and including us in the plan of care!
Sarah Shaneyfelt says
LOVE THIS SO MUCH!!! I have learned to speak up over the years. Harrison had gotten really sick at 6 months old and had to be taken to a pediatric ER. I trusted the medical professionals to do their job (because I felt like they knew better than I did), BUT after a while and having a sick feeling in my stomach, I spoke up and made them stop what they were doing. My only regret is not speaking up sooner–and I’ve learned from that to speak up now. Love your tips on keeping notes on your phone and taking video!
MeetTheShaneyfelts
Bonnie says
Yes! Yes! Yes! Never be afraid to speak up. From a health care provider’s perspective, I always appreciate those that do advocate for themselves. It makes us all a better team. I always tell my patients, “You’re the paying customer. Your voice matters!”
Mix and Match Mama says
Oh that’s good, Bonnie! That’s spot on!
Beth Vogt says
As a teacher, I encourage the same in the school world! Parents are vital! I could go on…. But I will leave it there!
Kara says
Pharmacist mama here❤️ we love to be an advocate for every patient we take care of, I primarily see elderly at my clinic, but they tell me daily that they trust and value my care and professional opinion as much as their MD. We spend so much time focusing solely on medications in school and I always tell myself that I am the last person they will see before taking that new med. it’s not always an easy job but we all love what we do and taking care of sweet patients like your girl is why!! 🥰
Mix and Match Mama says
Pharmacists (in my opinion) don’t get enough love! You guys are so valuable and just as important as the person writing the prescription. I am so thankful for my two pharm friends!
Becky says
My husband had ALS and I had to advocate for him. You wrote an excellent article about medical advocacy. One day I got back to the hospital after taking a brief break and my daughter rushed to tell me they wanted to give him oxygen – an absolute NO. I ran up to his floor and pulled up information from ALSA proving he should not have it. I had to advocate and advocate again for him. I too wrote down a lot of questions and had a handout I would post in his room. I complimnted when he got proper care and came down hard when he did not. You know your patient better than ANY doctor!
Mix and Match Mama says
Sending you BIG LOVE, Becky as you walk this road with your hubby. I wish I could hug your neck. xx
Traci says
Yes yes yes. The lady year and a half I have really learned to do this with our situation. Thank you for the encouragement to keep
On. ❤️❤️
Sheaffer says
Wow. Such good reminders for all mamas.
Sheaffer says
I hit publish before I was finished! I remember that day with the new doctor… you texting us, everybody praying, gosh it was scary. So thankful that Ashby has such an incredible team now and you in her corner advocating the entire way.
Kim Fox says
This made me cry. Two years ago I took my son to the ER in excruciating testicular pain. He was throwing up, passed out, screaming. After a very painful and intense ultrasound and two doses of oain meds (including morphine – my son was 7), they told us it was just a minor little issue that would resolve itself in a day or 2. Something didn’t feel right- I pressed them, I asked so many questions, I told them I just wasn’t sure. But ultimately, they convinced me and I took him home. 48 hours later we were back in the ER having emergency surgery to have one of his testicles removed. He had testicular torsion when we first went in. They missed it. The surgeon was furious. I was devastated. My husband was livid. My son was confused and in pain and sad. I kicked myself over and over for not pressing more the first time. I now rest in the fact that God was in control and that my son will be okay, but man I wish I had advocated more. I will forever wish that. Thank you for sharing.
Melissa Terry says
Yes and amen to all you said! Over the years I’ve dealt with some similar situations, though certainly not on the scale of what you and Ashby have been through and I’ve found my mama instinct to be right 100% of the time. It’s hard for me to question or disagree as well, but I’ve found if I do it from a posture of caring from my child and politeness, it’s usually received just fine and we can work it out. Simple things like asking for a topical numbing cream BEFORE they set the IV or allowing my child to see his brother after visiting hours, requesting new medications because something just isn’t working for us, etc. It all matters. Keep up the good work and thank you for the encouragement this morning. Ashby has a rockstar mama in her corner!!
Stacy says
Thank you for sharing!! I think this can also be applied when you become a caretaker for a parent.
Love all the sweet pics of beautiful Asby!
Mix and Match Mama says
YES!!!!!! I just watched my dad walk through this, you are 100% right! I should have thought of that. Thank you for mentioning it here!
Peggy says
Oh, how I wish I had challenged a fellow taking my mom’s history at a new doctor’s office. He was wrong and it might have changed the course of events, Also, pharmacists are such a wonderful resource. I am so sorry that they have suffered so much during the pandemic. A phenomenal one quit and I was heartbroken over it. They can be so overworked and underappreciated. This was a great list and thank you for doing it.
Jenn says
100% agree with all that you said in the post! As a former ER nurse and now nurse educator, when I teach new nurses about caring for pediatric patients, I push hard that the parents (and kids of course) are the best resource in knowing what’s normal or not normal for that kiddo! They’re all so different and their caregivers are the experts in their care and how best to provide it! I love that you advocate for Ashby and push for her to have the best care! Sending her and your family so many prayers!
Mix and Match Mama says
I can’t imagine how many lives you’re affecting!! Thank YOU for being in the nursing field!
Stacie says
Ashby is so blessed to have you as her mama!!
Heather says
Thank you for sharing! These are great tips for navigating a medical appt/diagnosis with a child. My child was diagnosed at 8 with a medical condition. He is now on the verge of leaving me behind and managing his own medical care. Watching how I have managed and navigated his diagnosis all these years has taught him how to advocate and manage his treatment now that he is moving into adult doctors. Best wishes to A.
Kim says
I hadn’t thought of this, but YES. We are modeling to our children how they will need to advocate for themselves as adults. So important.
Holly says
Great post and great advice, Shay. As the mom of an adopted daughter with heart issues, I’ve been down a similar path. I think asking questions can become even more important when you don’t have a full family health history to work from.
One other tip…know your benefits! If you have insurance, do yourself a favor and get to know the policy. Read the EOBs. Check to see who the in-network providers are. This way, even if you choose an out-of-network provider, you’ll be able to prepare for higher co-pays, etc. Better yet, delegate the health insurance management piece to your spouse/partner. I mean, I haven’t figured out how to get him to do it yet, but…. 😉
Having a thorough understanding of the insurance piece of managing a chronic health condition means I no longer worry too much about that part of it and I can focus on our daughter’s health and our relationships with her providers. Thanks for sharing your experiences!
Mix and Match Mama says
YES, YES AND YES!!!!! Goodness, I should have included this! THANK YOU for adding it here!!
polly pover says
Thank you so much for sharing. It can be so frustrating, scary, overwhelming, challenging and ultimately empowering to be an advocate. I have done it professionally and also personally. 2 shining moments for me: 1) when I told a doctor (who was sorta like the one you walked out of) to sit down because I had a lot of questions when he conducted the appointment with his hand on the door knob and 2) when i was meeting with a surgeon, he told me what he had to say, and then asked with a smile if my list was in my coat pocket because he didn’t see it and told me I could probably do the surgery if I could get the right angle! This was said in a very respectful way,,, Keep it at, Mama!!
Mix and Match Mama says
Mic drop, Polly! What an advocate YOU ARE!
NancyK says
Precious child. Ashby is blessed to have you as her mama speaking up for her!!!
Trudi says
Brilliant post Shay! This is such an important topic but it can also be so hard to do, when like you say, you feel intimidated by the expertise of those around you. My youngest, Georgia, had severe asthma when she was younger, I had to really push my GP to refer her to the hospital as he didn’t think her asthma was ‘that bad’. She was symptomatic every night which was affecting her sleep & overall well-being. When we eventually went for her first appointment, the doctor said that she needed to be under specialist care & needed medication that only the hospital could prescribe. That was at age 5 & over the years, we have seen many, many doctors, some amazing, some ok & some pretty dire. I went from being a fairly shy person, not willing to speak out of turn, to now being willing to advocate for anyone. She is now about to turn 19 (this Thursday) & is a healthy teenager with well controlled asthma. Sorry for the long reply but I feel so passionately about this, sending love to all the other Mums out there dealing with this xx
Mix and Match Mama says
Sending YOU so much love!! xx
Kay says
Thank you for this post! My daughter was scheduled for jaw surgery this year. We started to get a really bad feeling about one of the doctors who is part of this process and ended up switching very close to the surgery. Now, we have to start all over again, and! re-schedule the surgery. But we at least feel much more confident that this second doctor will have our daughter ready for surgery. I doubt myself all the time on this decision, and your post helped me realize that sometimes you have to go back to square one if you have doubts about who’s caring for your kid. Even if the carer is an expert and it delays the process. Thank you Shay.
Mix and Match Mama says
Good luck with her surgery! I cannot even imagine how complicated the process (and recovery!) is for jaw surgery. Sending you love! xx
Kate says
Kay, I am a 33 year old who had to get reconstructive jaw surgery as a 16 year old due to an underbite. They broke and repositioned both jaws with permanent plates and screws, and I couldn’t chew for 6 weeks. Unsure of what type of surgery your sweet daughter has to have but just hear to say that it was a great decision for me and a much smoother and speedier recovery than I could have ever expected. I loved and trusted my oral surgeon and nurses so much (and supplemental orthodontist & staff, too) and that makes such a difference. Your daughter is lucky to have you as an advocate! Wishing her all the best in surgery and recovery! (And praying for you, too.)
Kristin says
Kate, my 28 year old daughter has an autoimmune condition that is causing her body to absorb her jawbone. She’s doing a second round of braces to realign her teeth and will have either jaw joint replacement or a bone graft surgery in a year or so. She’s super small and weighs 95 pounds, and has lost weight because of the braces pain. She’s talked with a nutritionist about gaining weight and also eating post-surgery but, if you have any tips that you would be willing to share (and if Shay doesn’t mind that on her post), I’d love to hear them! Thanks!
Mix and Match Mama says
Please! I hope you get advice for your sweet girl. I’m so sorry she’s going through this.
Diane VandenPlas says
Thank you for such a thoughtful post Shay! I’m going to take it a step further and say that EVERYONE needs to have a health advocate – not only our children. I have run into similar situations with not only my six kiddos, but also my husband and our aging parents. Trust your gut and follow the steps you have identified in your post – it can make a WORLD of difference!
Lisa D says
I am dealing with aging parents now…. very similar to advocating for my kids who are now adults with their own precious children. Ask questions! Don’t be intimidated by the “experts”, these are your parents!
Kelly M Sites says
I’m a mama and a RN (for 25 years) and I want to say AMEN to all you said. I also can’t stress enough how important it is for YOU to be in charge of your own (or your child’s) health. It is so important to have a running list of medical stuff, surgeries, meds, procedures, etc. that you can refer to and keep track of. I have a 3×5 card for every member of my family (and one for each dog) with all the things on it. Teeth cleanings, xrays, CT scans, labs, whatever thing they have. I keep track. And refer to it often. Also, YES, Google MD is a thing, and it is annoying for medical people at times when people think they are experts because they read things on GOOGLE. BUT, we also appreciate you being informed and up to date and reading up on your issues so you can ask good questions.
Mix and Match Mama says
Thank YOU for taking care of precious people for 25 years!
Paula McKaughan says
Well said, Mama!!! I’ve been watching your Sweet Ashby grow since the day you guys brought her home! She is truly a Hero in my book! As sad as it is, they see and hear so much more than we realize. To have her parents Advocate for her is something she will never forget, and it will be a standard practice as she one day becomes a Mama. Prayers and Love to you all.
kelli says
This is helpful and obviously full of wisdom gained through some tough situations. Keep fighting for Ashby – I’m sure her seeing her mom calmly push for good care gives her added comfort and strength!
-For me, it was difficult as we were self-employed (read: self-pay at doctors!) for a while and it made it hard to walk out of an appointment and then owe $200 for me to KNOW in my heart it wasn’t the right doctor for my kids… Ugh!! Ultimately worth it, of course…but the whole medical things is so hard when you wrap up emotions, money, tough conversations, etc. SO thankful for amazing doctors and nurses out there who keep their human side and help!
-And learning to help my mother through cancer care, I applied many of the items you mentioned, but found it was hard to balance that with what SHE wanted and thought… When emotions started running high, I found it was helpful to be able to pull out my notes and show her what other doctors had said to her, etc. So that’s another reason to take notes.
Sorry this was long. I have feelings about the medical system -ha- and couldn’t agree with you more. 🙂
Nikki says
Great job, Mama! This is also true for your own health – advocating for yourself, and following your instinct is 100% needed. I found a lump in my breast and the doctor told me it was “just a benign lump” – turns out it was pre-cancerous and after a double mastectomy (a while later, due to family history), they found multiple cancerous areas. If I hadn’t advocated for myself and followed my gut instinct, who knows how it would have ended up.
Mix and Match Mama says
Oh God bless you and your instincts!!!
Abbey says
I would say yes to all this from the education point of view. Yesterday I had a very similar situation with my son and his educational future. I agree. Advocate. Ask questions. Do your research, and don’t undervalue your knowledge of the situation and your child. It’s hard when people who are experts in their fields say or do things that you don’t agree with, but speak up. You are the one who spends the most time with your child. I’ll stand on that soapbox with you.
Jen says
As a special education teacher I will agree with you from an education standpoint. As professionals we do what we perceive as the best option, but often we don’t see the entire picture because the parent knows their child better! I personally love when a parent comes to me with questions/concerns/ideas that will help me provide a better approach for their child. Advocating is necessary! You go mama!
Kelli says
It can be so overwhelming! I have had to advocate a little more firmly a few times for my children and also adults in my family, and I have never regretted it. Boundaries are good for everyone, and we can advocate in a clear, kind way. Thanks for sharing this!
Amy says
I love that you included pharmacists and the huge role they play. They have a tremendous amount of knowledge and care so much about their patients.
Elizabeth Whisler says
This is so perfect. In my experience, it wasn’t one of the kids, but it was a parent. And it’s A LOT. I know exactly that feeling of thinking in my head in a meeting room full of doctors, specialists, surgeons, transplant team, etc…these are all experts in their fields…I work in the legal field…what the heck do I know…don’t open your mouth…but this doesn’t seem right…should I ask? No, they will think I’m an idiot or a pain in the butt. But it’s exactly like you said…MOST of the time the doctor didn’t tell the nurse or somehow it didn’t get passed on to the surgeon, etc. And 99% of the time they welcome the questions, they welcome the input, they are all aware they are human and mistakes can be made and they appreciate the all hands on deck approach….but when one of them is above all that…RUN. Run for your life. Because it is quite literally for your life.
Ginger says
This is all such great advice. AND it is also good advice for advocating for your elderly parents. Both my parents are in their late 80s; they still drive. My brother or I go with them to their doctors’ appointments because even though they still live on their own, they don’t hear as well and they are of the generation that almost never asked questions of the doctor with the big degree. They also need advocates as well as another ear to hear what is being said and ask questions until everyone understands and is on the same page.
Erin Hernandez says
This is a fantastic post! As someone who works with cancer patients for a living, I am amazed at the sometimes lack of coordination and near misses that happen. As a mom and patient, myself, many times I leave a healthcare situation ever so thankful for my own training and knowledge, and truly wonder what happens to those that don’t have it. I think these are good tips for those of us that are in the early stages of caring for aging parents as well 😉 Thank you for sharing!
Kim says
Thank you for sharing. This may also mean advocating for a parent, who is no longer able to advocate for themselves.
I am my mom’s youngest child, and she has dementia, a terminal medical condition and is malnourished, so I need to do all the things you mentioned above for her, too.
Honestly, we all need to advocate for ourselves and those we love, especially when they can’t.
Danielle says
I love love love this post. I am a special education attorney and I tell my clients all the time, “you are the experts in your kiddo”. If something doesn’t seem right, follow your instincts and ask more questions. I love the, “help me understand” type of question because it gives you more time to process and gather more information before making a decision. I also tell parents to be like a reporter and ask the “who, what, where, why, and how” questions. Be polite, firm, and respectful but ask your questions, stand your ground, and get your answers so you are comfortable. Anyway, thank you for writing this post. Its important.
Holly says
My advice would be, if you are going to a morning appointment that isn’t right next door to your house, go ahead and stay with a friend, in a hotel, in any type of accommodations close by the night before. Alleviating the variables of traffic, etc makes everyone less stressed which helps everything. Also, most hospitals have valet parking – always worth it.
Kara says
As a healthcare provider, this is such a great post and wonderful advice. Take notes, keep a journal and never be afraid to ask questions! You are doing an amazing job advocating for your kiddo.
Patty says
Yes, yes, and yes to all of your points Shay! As a Mom who advocated HARD for a daughter who had many surgeries in a 3 year span (high school years), I did the same. I let her speak up as much as possible but didn’t hesitate to jump in if necessary. I kept meticulous records and lists of timelines, medications, procedures, all Drs involved in her care, etc and took it to every single appointment. I was thanked over and over again for keeping it all in one place and providing each Dr with a copy of everything. I will say that after driving many hours for her to be seen at the Mayo Clinic in Scottsdale (and not being at all happy with the Dr assigned to her case who pretty much dismissed our concerns), when we received a copy of the appointment notes the Dr had written that “mom was overbearing.” Very frustrating when all I was doing was trying to get him to understand he wasn’t addressing the reason we were there. Needless to say, we never went back. I got so many more “great job, Mama” comments, and that one comment just fueled my fire to keep advocating as much as she needed me to. Once her confidence was up as she got older, I stepped back and she became her own best advocate and today is a happy, healthy, and well adjusted adult who appreciates that we went through all of that together. Keep it up, Shay! And many prayers and blessings to your sweet Ashby!
Rebecca Lingerfelt-Brown says
YES and AMEN! Been in positions like this before with both of my kids- still dealing with a kidney issue with my son. Advocacy is the absolute key and as you mentioned your Momma gut will tell you if it isn’t right or you need a change. Glad things went well yesterday- I cannot imagine your journey but thankful sweet A has you and her medical team! 💜
Becky Grech says
I am a mama of 2 NICU babies (who are healthy happy 12 & 10 year old boys now). And it was SO HARD to speak up during their stays (30 days and 53 days). As a parent, you want the Dr. to be the expert, until you see something that makes you question a decision. I learned to speak up, to ask questions, to push back and be the advocate that my children (parent, spouse, whoever) needed. So hard, but so necessary. Mama’s instinct is so important. Sweet Ashby is an inspiration to all of us!
Ashley Byars says
Yes to advocating! We have one kiddo with a blood disorder, and 1 with learning disorder. We joke at our house that advocating is a full time job, but it really is! Good for you for speaking up on Ashbys behalf! When she’s older (and probably already is somewhat) she will be the best advocate for her needs because she will have seen the importance of it from you.
MelanieL says
Thank you Shay! I know your wisdom in this area will be a huge help to many who are navigating important medical things and needs to read your message this morning. As a person who is quiet, introverted and very non-confrontational it’s definitely a learned skill and takes practice and a lot of courage for me to speak up but I try my best. 🙂
Margaret says
Shay this is such a great post! I would like to add that as parents when we do this for our children it helps them learn to be their own self advocate as they age. I will never forget when my youngest son cut his finger really bad and we rushed him to emergency room – they wanted to give him this strong pain medicine and injections etc and my 11 year old son said before we could say anything “ no thank you, I can manage my own pain”. 🙂 Over the years raising 4 kids i have been shocked by some of the doctors, their orders, not believing side effects, symptoms, parent instincts etc. Yes they are trained / educated etc but they are still human and make mistakes and don’t know our child like we do!
It is so crucial for our children especially in the world today to learn to ask questions and self advocate. Our world must critically think more! And this post of yours will hopefully help parents to advocate more in turn setting an example and a guide for their growing children.
Thank you for sharing your experiences and I know everyone in this little blog world of yours is so happy Shay Shull is out there advocating hard for adorable sweet Ashby! Happy Easter!
Joanne says
I also made sure to advocate for my kids in front of my kids and explained why/my thinking to them later on knowing that modeling good advocacy would help them be more assertive when they became adults. I agree with all your advice (though I kept a separate notebook with all that info on it and not on my phone).
Tricia says
Yes, yes, and YES! My kiddo is nine, and he’s had a plethora of special needs–born at 30 weeks with an unconnected esophagus and a floppy airway. He’s had more surgeries, procedures, and illnesses than I can count. I’ve learned to speak up on several occasions because I know him best. I’ve had medical professionals doubt me or those who’ve made me feel like a poor mom. I’ve also had some who wouldn’t listen until I firmly said, “He needs _____ [fill in blank], and he needs it NOW. It may make my blood pressure go up in those moments and I may be praying like crazy to keep my cool and still not wreck my witness for Jesus, but speaking up for my kiddo is ALWAYS WORTH IT!
Christine Maywald says
If they offer new, expensive medication, there is almost always a savings card that is available to help cover the cost of the medication. Sometimes, the savings card will help pay down deductible if medication applies to deductible. You have to work the system!
Mary says
1,000 percent agree!! Such a good post!! Thank you for sharing!!
Kelly says
Amen to all of this. And a reminder that even when they don’t respond in love and kindness, oh well. I am a people pleaser and hated to upset the “experts”, but I quickly realized their feelings were far less important than my child receiving the proper care. As my husband (a high school principal at that time) would remind me- he always appreciated parents who advocated for their child, because his job was to advocate and fight for the best learning environment for 1,500 kids, but it was up to each parent to advocate for the unique needs of their “one”, and I took that concept with me to every hospital and doctor visit!
Mix and Match Mama says
THIS! Yes!!!
Mary Anne Duke says
Allow me to step up on your soap box to advocate for ourselves!! A doc came into my hospital room(never met him before) and told me what HE was going to do as a surgeon. I politely said no thank you and called another doc. I was totally correct..the doc not so much. Your gut feelings are important…ask questions.
Also, advocate for your parents as they age. Most of you ladies are younger than I but, as your parents age they will need you assistance with health matters. I did not say want but, need! Many have set docs on a pedestal and will not question for themselves. You must help because you love them so much.
Thank you, Shay, for bringing up this very important problem and solution.
Mix and Match Mama says
Thank YOU for this very thoughtful comment! I appreciate it so very much!
Elonda Eischen says
I love this post. I agree 100%. I had breast cancer in 2021. I am luckily cancer free now but dealing with the side effects of drugs. Everyone should take note because it is important.
Mix and Match Mama says
I am so happy you’re cancer-free, Elonda!!
Debbie K. says
Great advice…This post is well done, Shay. As a mom on the other side of raising my children, I can for sure say that you are spot on with this advice. My husband and I would always say if we don’t stick up for our kids, who will? Funny story… Our son got ear infections quite often as a baby. I would always know by the smell of his poop. I said what I said…LOL. And I was always right. But they didn’t ask that question in the pediatrician’s office. No he didn’t have a fever, no he wasn’t pulling at his ears, yes he was taking a bottle… “Why do you think this?” Is what I would get from the nurse. When I would tell her, it was almost like an eye roll, but I knew my baby!! And I was right every time. I told a student doctor this story and the pediatrician shook his head yes when I said listen to the parent! Thank you for sharing such great advice on your platform for all the moms still in the thick of raising their families.
M says
As another mom of a kiddo with a rare disease, I cannot echo this enough! People always ask me my best piece of advice, and this is it: trust your gut. Doctors know their field, but you know your kid. If you’re a Rare Parent, especially, you’ve learned a lot along the way, which is enough to advocate for your child, ask questions, or as Shay said, put your foot down.
KERRY OUELLETTE says
Ashby is absolutely amazing! Not only is she a sweet and beautiful little girl, she is FIERCE! I agree about advocating for our kids and for our SENIOR CITIZENS. Interestingly, both are treated similarly. Go Ashby, go!
Kyla Dickerson says
Your post was spot on! I have a 12 y/o son who was medically complex as a baby! We advocated so much for him! I remember vividly asking when Will would be able to come home from the hospital( he was about 6 weeks old at this point) and the doctor said to me ” when will tells us he’s ready.” Without skipping a beat, I said, ” well will and I talked this morning and he told me he was ready to come home!” That doctor didn’t know what to say! He was coined “pioneer Will” as he was the first baby to come home from the NICU at UNC with a nasopharyngeal airway! I don’t say that to “brag”, but rather to your point; ADVOCATE, ADVOCATE, ADVOCATE! You know your child better than anyone!
Heather says
This is amazing advice! You go mama! We all know (thanks to you!) what an incredible girl Ashby is. But this post made me so proud of YOU, Shay! Ashby and all your kiddos are so blessed to have you as their mama!
Alicia Worth says
Thank you for this. I am a mom of 3 and my third was just born with Down Syndrome. It’s a whole new world.
I would say for years everyone has said trust your mom gut. But it took me a while. So have grace when you are learning what your mom intuition is. I am still nervous about “rocking the boat” but more times than not, I have been right which validated me to speak up again when I feel something is off. Advocating is something that is learned for must of us and it’s ok to get it wrong too.
Thanks for you post. I needed it today!
Katie says
Love this post and needed it today! My daughter is a brain cancer survivor.🙌🙌 I wa literally told by her pediatrician that I was being too over protective and she needed counseling cause it was probably psychological. I got mostly emotional and told him he was wrong( but inside he made me feel so inadequate) I took her to the ER days later where the tumor was found. I told myself I’d never not trust that gut feeling ever again. Years later now, we are so so grateful for her life but there are many side effects and challenges. Once again I’m in a position where I’m needing to push and advocate and yet I have this tendency to feel like I’m a bother. This post helped me and was my God wink to make those calls. Praying for your sweet Ashby!🙏🙏💞💞
Mix and Match Mama says
Oh praise Jesus for your daughter’s health, Katie!!!!
Yolanda McLean says
Such a fantastic post! Thank you so much for sharing so passionately. So often we feel intimidated and don’t speak up, walk out, ask questions, etc. This is empowering!
Nicole says
Shay I love this post. Its such a good reminder. Living with a chronic, life threatening disease myself, I cannot agree more that it is so important to be an advocate for yourself, your family, especially your children. Do your research, establish trust in your care team and do not be afraid to ask the questions, share your concerns or push back! Ask to be a partner in the decision making. I also like to understand the ‘why’ behind the treatment decisions to not only help me make an informed decision but also to help with my adherence. Ashby is lucky to have you!
K.K. says
Shay, so great! Thank you for this.
Diane says
As a speech pathologist for thirty six years, I always tell my interns to always listen to the caregiver! A HUGE red flag if the professional does not. This is the best parent advocate article I have ever read. On that note please say a prayer for nine year old Waco, kiddo, Colter Clements, who had a serious brain bleed a year ago and is undergoing a ten hour surgery today at the Barrow Institute in Phoenix to repair the source (a genetic cavernous malformation). At this point he has regained his cognitive, swallowing and communication skills with progress in gross/fine motor but in a wheelchair and working on transferring independently. Prayer warriors unite 🙏🏼. #faithoverfear
Megan Bowen says
This is such good advice. We were chosen to be their moms and that means we have to do our best for them every chance we get. One time when my daughter was little and had symptoms similar to a cold or other virus but just a little worse and lingering, I pushed to have the doctor see her a second time because it just didn’t seem right and the doctor complemented me for bringing my daughter in as her illness had just turned into pneumonia and could have gotten so much worse if we didn’t addressed it quickly. It was a great reminder that we are the ones who know our kids best and that even little differences in their behaviors are often great indictors of something bigger.
Debi says
This is so true and being an advocate for your child is important in every aspect of their lives and at any age as a minor. Listen to your gut is some of the best advice for parents. This is also true when it comes to caring for spouses, elderly parents, etc.
Caitlyn Keller says
My son has a very rare bone marrow disorder that requires him to get blood transfusions monthly. Everything that you wrote is spot on. We went to the ER at childrens in Dallas once and the doctor wanted to run tests on him that showed that he clearly had no idea what my son had. I kindly asked him to go and look up his disorder and then come back in for us to talk before he ran unnecessary tests to traumatize my kid more. As a person who doesn’t love confrontation and is a people pleaser, this has stretched me. But those momma bear instincts come out and I have no problem advocating for him to get the best care possible!
Thankful to hear this from other mommas who have to advocate for their kids. When your child is rare and extra ordinary you tend to feel alone in some of these issues! Thank you for sharing Ashby’s journey with us!
Eileen McAllister says
Outstanding post, Shay!! As a senior citizen every word you said could also be applied to any patient’s caregiver who interacts with their physician. Often we are intimidated by doctors and think they know best (My Mother was exactly like this) but as her daughter who didn’t exactly share the same views I often had to speak up for her. I wish everyone who is a caregiver for others could read this post . Such really valuable and helpful information!!
Maggie says
Maybe an odd comment as I’m not a Mom, but have had ongoing medical issues my whole life – it’s going to help Ashby be able to advocate for herself SO much more because she’s watching you do it. My Mom did the same thing, and I know how to advocate for myself as an adult now because of the example she gave me. To never think your questions don’t matter, they do; it’s your body. To take lots of notes, and if you need some space to think about it then say that. Asking for second opinions and lastly but most importantly listening to that inner guidance that says hmm something just isn’t right here and acting on it. So way to go being an advocate, of course but also way to go for leading by example and teaching her hugely important life lessons she’ll need later. Prayers for you both.
Mix and Match Mama says
Thank you for sharing this perspective, Maggie. xx
Amber Cottone says
This is such an important and great post. As a female, I feel we were raised to be quiet, respectful and listen to authority. I wasn’t always taught to speak up for myself but I learned to do that while pregnant and I didn’t agree with the doctors opinions. It isn’t easy advocating at first but thanks for bringing awareness the importance of it 🙂
Kendra says
Thank you, thank you for this post. God is so good because this couldn’t have come at the most perfect time. I literally walked out of a doctor’s office yesterday with my son who has a broken arm because the doctor came in, flippantly expressed he wanted to do surgery TODAY, my 9 year old begins sobbing and he looked at him and chuckled. I stopped by the front desk and got a copy of his imaging and records and we have an appointment with a pediatric orthopedic surgeon in a few days. I let the enemy make me question and doubt but I also knew deep down that I could not let that man cut on my son. He wasn’t willing to explain anything or even acknowledge my son. Thank you for sharing, it means the world.
Angela says
I love this post so much! I will say that I advocated for my daughter one time at the hospital by telling them that I did not want them to do what they were proposing. They called Child Protective Services and did it anyway. I found out that they can and will trump your “parental rights” if they believe you are standing in the way of medical care. It was a horrible and scary experience for us and our 14 year old daughter. I wish I had a better understanding at the time of my legal parental rights. I would encourage other parents to have this knowledge.
Christina says
Thank you, I needed this post today. We were just told our daughter needs to have a more extensive surgery than she had in 2020 this summer because it did not provide the results she needed. We are praying something changes significantly before her next scans so she does not need this.
Our daughter received a diagnosis at 3 for her conditions and it was after pushing her pediatrician who kept blowing us off because we knew something wasn’t right, firing him, and finding a great peds who referred us to our team. I’ve had to recently fire our new orthopedic surgeon as well (ours retired sadly), because his ego couldn’t fit us in the room ha! We are super thankful to have a great team overall.
I have found that bringing our daughter into the conversation for certain things where she has a choice has been helpful and has empowered her in taking responsibility for her care and advocating for herself. She is only 6, but if she is going under for an MRI, she was able to choose the gas or IV. She’s chosen both and now knows what she prefers. Obviously, she can’t do that for a lot of this, but where she can I’m trying to teach her she can speak up and ask questions in her own care.
We’ve also found doctors who are willing to consult with other doctors. One of her surgeons, who has a list of credentials a mile long and every reason to think he can decide the best care for our daughter, willingly consults with many other doctors from around the country. He is looking for them to poke holes in his approach to her treatment so she gets the best care possible.
I’m here soapboxing with you <3
Sarah says
This is such an important post. Thank you for giving clear and concise action items that are doable and very helpful. Thank you too for encouraging parents to listen to that inner voice and act on it. I think about the times I didn’t do this and have real regret. I will undoubtedly refer back to this post on the future!
Lora LaRosa says
Totally agree. Your post can apply to adults as well. You have to be an advocate for yourself. I am recovering from lung surgery and I asked lots of questions. I had total confidence in my team of doctors but it did not stop me from asking lots of questions. No question is a dumb question. I started a question with my surgeon as this might be a dumb question and he told me no question is a dumb question.
Amanda says
So proud of you! I can only imagine how difficult it can be! Have you ever worked with a child life specialist? I was a child life specialist for five years and worked with pediatric patients and families in multiple settings (surgeries, MRIs, outpatient clinic, inpatient hospitalization) and part of our job was to help advocate. I am hopeful that you have resources available and people that support you! Praying for y’all as you continue to walk this journey.
Mix and Match Mama says
We saw one just yesterday and she even had her dog with her 🙂 . It was an extra blessing!!
Jennifer says
I absolutely agree! My husband works in hospital administration and is over patient safety…hospitals make mistakes! He was very outspoken with the clinicians during our daughter’s last heart surgery because he wasn’t ok with something they were doing.I have a hard time doing that, but he knows some of the worst mistakes that happen. I don’t think we ever regret asking more questions just to be sure:)
Mimi says
I think EVERYONE big or small needs to have an advocate with them at the hospital. You pretty much need to do your own research and tell them what they need to do. As someone who used to bill for hospitals, their number one concern is how much they can bill. It’s all about money and the bottom line. The more they bill the higher the bonus. If they can do a surgery they will do it whether you really needed it or not. Get more than one opinion ALWAYS! I really thank the Lord when my child broke their arm a Physicians Assistant was able to reset it without surgery after I was demanding for an actual doctor. The Orthopedic surgeon told me she would have done surgery and wouldn’t have wasted her time to reset it. Remember the medical system is a business first and foremost so never ever go without an advocate.
Keisha Dawson says
Such incredible information that I know will help so many mamas!
Beth Keller says
I love this post!! So spot on!! You did an awesome job hitting all the points!! And regardless of how much of an “expert” someone is…no one knows your child better than you!! You are such an amazing mama!! Your kids are so lucky!! And thanks for sharing all of this!!💚
Penny says
Same goes for elderly parents. Mine are still mentally aware but they are from a much different time where you never question a doctor. When things don’t seem right, they often aren’t. It’s tough as they may not want you to step in but sometimes we must. Thank you for sharing all of your wisdom!
Laurel M says
It’s all about the pharmacists!! They are trained to know drug interactions and side effects. It’s so important. Doctors are familiar with these drugs but not as in depth as pharmacists. Also it never hurts to google drug interaction checker and plug your meds in. I was once taking two drugs that amplified each other, and I figured that out on my own and tapered off one because my doctor didn’t believe me.
Liz says
Reading this post as I wait for my son to complete a sedated MRI to prepare for his second brain surgery in 6 months. I agree that the momma gut is usually right but as my son has gotten older his gut is important too. We recently traveled nearly 1000 miles for a second opinion but the hospital didn’t feel right to him so we returned to our original hospital. He has to physically and mentally recover from surgery so we felt that where he felt safe was just as important.
Also, I proudly wear a shirt that says advocate like a mother! I have earned that shirt over and over!
Mix and Match Mama says
Oh mama! Sending you and your son so much love!!
Colleen T says
That advice was really great. As a retail pharmacist, I really appreciate the shout out on how important it is to have a relationship with your local pharmacist. That is so beyond true. By having a relationship, we can look out for interactions, issues and when medicines are hard to find, we can help. Being so nice to the technicians is so important too. I cannot tell you how mean and dismissive people can be to the retail pharmacy staff especially in the past few years. And having a list of your medication and questions for your doctor is so important. Also, if any doctor is EVER upset that you are getting a second opinion, that is a red flag. Physicians who are confident in their information do not have a problem with patient going for a second opinion.
Gail says
Thank you so much for this post! Years ago my toddler had recurring ear infections with no symptoms. We were in and out of the pediatricians office every 2 weeks for months… first for the diagnosis and getting the medication, then 2 weeks later for the check up to say Yes, its all clear now. This went on for a few months until we ended up in the Urgent Care on a weekend. I went to the front desk and told them I was not leaving until I got a referral to a specialist and they were going to have to listen to my child crying and screaming in the waiting room until I got it. It only took a few minutes til I was at the head of the line and had that referral. Years later a Dr. That worked there told me they got bonuses for every ‘healthy child’.
Susie Harrold says
I loved this post. We all love Ashby and pray for her. I’m glad she has a mama standing up for her and literally making a way for her to get the best care. My husband is dying from a disease that many have never heard of (MSA) and when go to appointments or the hospital, so many doctors and nurses have never heard of it. Neurologists have, but regular medical doctors are in the dark for the most part. Most listen to me when I go over symptoms or what is happening on that particular day, but I’ve had to explain so much she’d stand by what the other doctors have told me to do.
That story about the doctor who wanted to rush into surgery was chilling, especially when her retired doctor called your cell and told you to get Ashby and leave. What she could have gone through if you had not been stubborn about checking.
This Internet family loves you!
Mix and Match Mama says
Oh Susie, I’m so sorry for this journey you’re on right now. I wish I could give you a hug. Sending you so much love. xx
Shelia Maxwell says
Amen Shay!!!!
I can’t express ADVOCATE, ADVOCATE, ADVOCATE for your kids, yourself & family.
I was able to be apart of Sweet Ashby’s team for almost 5 years…this was the 1st time I’d heard about new doc wanted to do said surgery.
I watched her progress & growth over a period of time…she is truly a BRAVE, STRONG, ROCKSTAR!!!
I also watched an AMAZING mama take wonderful care of her sweet girl, engaged in her care & always on top of everything…you too are a POWER HOUSE ROCK STAR!!!
I’m so thankful your weren’t intimidated to pick up the phone & call her previous team & ask them for advice. Ashby has always been their main focus, along with her parents.
So thankful you found her new team & your pleased with their care of your sweet girl.
Thank you for giving parents & family a blog to follow with the most honest & helpful advice!!!
Sure, miss you all…much love…xoxoxo
Mix and Match Mama says
Oh friend, YOU ARE AN ANGEL!!!! There are not enough words. You are a FREAKING ROCKSTAR and Ashby and I love you so very much. xx
Kayla says
Great advice…and it’s encouraging for other moms to read this. I’ve only experienced this with (comparatively) minor situations. But the relief I felt when I spoke up or pushed for more explanation or care was well worth it. Sometimes I think we don’t want to feel rude, pushy, or like we don’t trust what a doctor or professional is saying. I think it’s so important to realize, that for the sake of our children we have to speak up!
Lisa Edds says
My child with a lifelong disability is now 32. There have been times that I have had to step in and speak up for him. He has had many brain surgeries and IVs. My rule is the nurse/medical professional gets three sticks for an IV. After that, someone else, usually a NICU nurse is called to try. Never feel bad about speaking out for someone you care about.
Tailor says
Amen to all of this. When our daughter was 3 months old, she went in for a routine procedure to finally rule out some of the ongoing health issues and it almost took her life. Her bowel perforated and for 24 hours, I knew something was “off” and kept getting pushed to the side. Finally, I called for a care team to look at her and my 3 month old baby girl was in septic shock and rushed into emergency surgery. She ended up on a ventilator for 9 days and only had a 30% chance of living with lots of other battles along the way…but it is our job as their parents to put the pieces together and advocate for our babies. We are the experts of our babies and I think that should contribute every time to their care plan.
Susan Gilchrist says
Excellent advice for all and thank you for posting.
Anna Davis says
Such great advice! As a hospital administrator with a kiddo who was recently diagnosed with Crohn’s Disease (:-(), it is so important to speak up. My only other recommendation is (when appropriate) to help your kiddo voice their preferences, share their story and make sure they feel empowered to advocate for themselves. As an 11 year old with chronic disease, this unfortunately will be her life, so she needs to feel in charge of the pieces she can control and supportive of the ones that are outside of her control.
Thank you for sharing this, they are all great points and I hate that people have to advocate for what they need, but it’s an important skill!
Sheila says
Yes to everything! As another mom of 4, one with a severe disability, being an advocate is so important. One thing I might add is, while family and friends are so supportive, with love, helping out with siblings, cooking, etc. it is also important to find people who share what you are going through. You can find them online, through your doctor, or school, or a nonprofit group. They are the people that are going to say, “I get it.” And they really will. I have made amazing friends who have kids that have the same diagnosis as my son. It truly is a magical thing. Hugs!
JaciK says
This goes for adults (spouse, parent, adult son/daughter) in your care too!
One thing to add…once your child is 18, you have no rights. Get a medical power of attorney. If for some reason they can’t make a medical decision, it give you the power to make it for them (someone you’ve known for 18+ years over someone who probably hasn’t known them 18 minutes)!
Ashley says
Thank you for this post, Shay. When my Mom was diagnosed with terminal cancer I fought hard as her advocate, especially when it came to end of life care. There were some very tense words exchanged with the hospice coordinator who didn’t want to even give her a feeding tube!
One recommendation I have goes along with #2, keeping a list of medications, etc. Create a shared drive on Google (or another provider) with that document stored on it along with a list of doctors, contact info, insurance info, and any other documents you might need to access quickly. You can share that drive with anyone else who may be a caregiver for Ashby, like your parents, so that they have quick and easy access to the most current information if they need to get her care when you are not there.
You are a wonderful Mama!!!
Leslie Stewart says
Great post Shay!! This also goes for aging parents – advocate for them as well!
Laura says
Question for everyone who’s dealt with surgeries… The surgeon I will have operating on me is world renown, and I trust that his skills are more than enough to complete a successful surgery. But his office is scary unorganized!! Their communication is nearly nonexistent. Have yall encountered difficulties with hospital staff like that? (ex: scheduling a surgery was a nightmare!)
Very much appreciate your thoughts on this Shay! Good call on posting it today -it’s obviously really hit home for a lot of us!! (these comments are amazing!)
Lauren says
I have! Two things you can do is research your condition and see if there are online forums for it, and the. Put up a message asking if anyone has experience with that doctor. See if they have specific advice about their communication since they have dealt with them. The other is you can call and ask to speak to the office administrator and just say you’re nervous about your procedure and are concerned about the communication. Say you’re so thankful to be part of their practice but you’re concerned. They might listen and make some changes at least with your case! I also get surveys after all my procedures so you can definitely take advantage of that!
Laura says
Thank you so much for your feedback!! I haven’t thought to specifically ask about that on a forum. I will! And will keep those words in mind about their communication. First time for a major surgery, so it’s been hard to navigate it all. Thanks again! 🙂
Lauren says
I am a patient myself and I can’t stress enough now important it is to advocate for yourself. A few pieces of advice (some the same!):
1) Utilize your primary care doctor. Send them portal messages or emails saying “just keeping you in the loop!” anytime something happens or you see a specialist. This is so
Important because there WILL be a time where you need that doctor to step
up for you. My PCP has had to call my specialists for me a few times because their communication was poor and it was helpful for her to have all the details in her mind throughout the year.
2) Have a sheet of paper typed up with all your info. All of it. Contacts, Doctors, meds, copies of cards, your preferred hospital etc. Email it to yourself and save a copy in your drafts. Screen shot it.
Have it in many places so if you’re in the ER the docs and nurses can text it to themselves.
3) Have a folder on your phone photos with screen shots of above medical info, your license, and any photos you may need to show your doctors. I have sever skin reactions to cardiac monitor stickers and they never understand how bad it gets until I say “hold up, look at this photo, that’s what will happen if you don’t use the hypoallergenic ones.”
4) Get a second opinion if you want one. A good doctor encourages it! Always reassure them you aren’t looking to leave their care you simply want to explore all options.
5) If you’re like me and go through phases of constant hospital trips or ambulance rides, have a small bag packed and stored away with pajamas, toiletries, phone charger, etc so that you don’t have to worry about sending your spouse on a wild goose chase around the house as they hunt for your favorite pajamas. 🙂 Also, if you plan to go far from home, toss the bag in your car. Never hurts to have it.
I could go on and on! 🙂
Suzanne Bjortomt says
Yes! All of this is so important! And I know first hand how this is important to remember with aging parents too! If we don’t advocate for them, no one else will! Thank you for this good reminder!
Catherine says
Absolutely on the mark Shay! I have had to do it with doctors, psychologists, psychiatrists, in hospitals, in aged care facilities etc. for various family members. I am very introverted and normally don’t seek out confrontation of any kind but have no qualms advocating for my family now. Mostly because my cousin was an ER nurse and she told us of all the mistakes doctors would make and encouraged us all the time to think of them as only human and to absolutely advocate for ourselves. It helped me stop thinking of them as almost superheroes that shouldn’t be questioned I guess. Which is how my parents thought of them. Anyway, great post and great job with Ashby! Love this!
Emily says
GREAT job, mama! My oldest has asthma and my mother-in-love died of ALS 6 years ago. Numerous doctors asked me what medical field I was in when we were/are at appointments. I would tell them that I’m just a boring CPA who loves fiercely and that means taking time to learn and know what to ask, expect and require. Always kind, but always an advocate – patients get overwhelmed when things happen to their bodies and need a leader. You’re a great one to sweet Ashby! My brother always says, a surgeon will typically always want to operate – it’s their talent, job and what they are trained to do – but it isn’t always best!
Heather says
This is an excellent list. And relatable. I am so grateful for children’s hospitals and pediatric specialists.
Christy Johnson says
I was blessed with a pediatrician who always said, “all of my training cannot compare to a mother’s intuition.” He gave me the confidence early on the trust that and I needed to many times. Very good tips for advocating for our kids and ourselves!
Peggy K. says
Our first son’s pediatrician taught me how to advocate for him. He has a rare sinus deformity, and any sinus infection had to be treated quickly and aggressively. She had a small medial library in her practice, and she would have a nurse watch my son while I did some research with her guidance. She consulted with other doctors and insisted I do the same. She saved my son’s life! When we moved away I could not find the level of care we had with her. She was always just a phone call away, and she encouraged me to not give up and speak up, loudly if I needed to. He is now a healthy, happy 35 year old. I’ll be forever grateful to her and will always remember what she taught me.
Janet Inman says
Thanks for posting these tips Shay. My sons are now in their 30’s, but, one of them needed tubes in his ears. He received the first set and within a few weeks, they felt out. When my 3 year old son and I were in the dr’s office and I asked him a question, he became irate. He started yelling and threw his clipboard at me. He told me that I should never question him and he would not allow that again. I left that room with my sweet little boy (both of us in tears) and went straight to the front desk. I expressed my concern and said I would never come back to that dr again. I called our pediatrician and discussed with him what had happened. He encouraged me to report him to the medical board. After several phone calls of being interviewed by a few drs, this dr. was forced to retire. There had been others with concerns about him as well and the board was very appreciative of my report.
So, to all momma’s, no matter how large or small the procedure is, if something is “OFF,” report it. I know this is an example of extreme behavior, but, I can’t imagine any person being operated on by someone being that mentally unstable. Stand up for your child no matter what! We are their advocates in all areas; education, healthcare, etc.
Thanks!
Brandye says
Love this. Same for aging parents. Same for Parent-Teacher conferences. Be respectful. Be kind. But stand up for your child/loved one. It may out of your comfort zone. Do it anyway.
Lesley says
You are exactly right — I fully respect the Dr when I have to go for anything or back in the day for my kids. But they are ‘practicing’ medicine and medicine is an ever evolving science. Which is a blessing. Researchers and Drs are constantly making great strides in the medical world. So it is important to speak up and say something doesn’t feel right. Bravo to your post and sharing the wisdom.
Pam English says
Shay, loved your post about being an advocate! I might add that adults need advocates too🥰 My husband had a massive stroke out of no where at the age of 44 and it forever changed our life. I’ve had doctors tell me that he would not make it to 45 and by the grace of a mighty God and a fierce patient advocate, that has an insurmountable amount of love for him , he is now 70-1/2 ! You have to go into an appointment armed with questions and as much knowledge as you can muster. Thanks for this awareness and love watching your kids grow up! Ashby Rules!
Angela Banae says
Oh Shay, I LOVE this post. Thank you for being so bold and listening to God nudge you to write about this. Being your loved one’s advocate is so important.
One year ago, my mama passed on to be with Jesus after battling the side effects from chemo drugs for APL leukemia. It was a shock to get this diagnosis. From the diagnosis and on, she was in the hospital for 8 1/2 months, until we brought her home to spend her final two weeks of life here on earth. It was grueling and so hard to watch my mom suffer. But. We were with her every step of way and I advocated for her like no other. There where times when we were told she’d “never wake up” from the medicine side effects and we were told that we should just let her go…but God. He was still showing everyone that He STILL is in the miracle business. She woke up, we got to spend some precious days with our mom, and God reminded us time and time again that He is faithful. It was so hard to watch our 67 year old mom go from being a fully involved grandma and so full of life to being confined to a hospital bed and fighting so hard to live. God taught us so much and He has now given me a heart that knows how grief feels because I have loved so deeply.
Thank you, Shay, for being so bold and sharing your mama feelings and the discernment God has given you. God is so good and through it all, He is there for us when we seek Him. Continuing to pray for Ashby & all of you as you walk with her, being a strong and advocating mama for those you love!
Mix and Match Mama says
I’m so very sorry for your loss, Angela. Thank you for the encouraging words. Sending YOU so much love today!
Laura Schueller says
My husband and I are on the flip side of this now with aging parents. Everything fully applies here, too, fighting for and making sure they and we understand what is being done. My FIL was being given a med in the hospital that his PC had already been told he had a terrible reaction to. It made us very aware to double down and ask all the questions and keep the notes, like you said.
Natalie says
Good advice for those with aging parents as well! We went through a serious procedure for my dad recently and even though the medical team was excellent, there was something missed. Not a big deal overall, but we had to speak up for my dad who was still very groggy from surgery.
Thanks for sharing this! It’s encouraging.
Cathy says
Shay, I can so relate to this blog post. My son was sick and I I thought it was the stomach flu. Two days later his gait was off and he walked like he was drunk. I took him to the ER where they did a lumbar puncture because by time they saw him he started to slur his words a little bit. His white count was very high and at that point I had a good idea what was wrong. They told me that my son had viral meningitis. To take him home and he should be fine in a week or two. I told them no!!! I wanted him admitted. They weren’t going to but they finally gave in. They kept him 24 hours and then sent him home. The next two days my son lost his short term memory. This time I brought him to Children’s Hospital. They did an MRI and another lumbar. They gave me the same DX. This went on for 8 weeks. I fought with dr’s and we even took him out of state to have him checked. I finally took him back to Children’s and demanded they admit him. They ran every test and their findings were the same. I insisted on a brain biopsy. They thought I was crazy but I knew what was wrong and that was the only way they were going to get an answer besides meningitis. They agreed!!!! The results came back and my fears were confirmed. My precious son was diagnosed, ( 9 weeks after the first ER visit and many more ER visits) with brain cancer. CNS lymphoma. Cancer in the fluid of the brain and spine. That’s why nothing showed up on the MRI. There were no solid tumors. My son was a patient in Children’s for 11 months. He suffered a major stroke and went through pure hell. He was in and out of the PICU. He went into remission and was learning to walk again. During those months I advocated hourly. They use to say, you don’t want to see the wrath of Cath. I was always kind until I couldn’t be. Every time meds or chemo was given. I wrote down the name of the med, the dose and the time it was given and I had the nurse sign it. I had a huge note book with every single thing that happened in the hospital. His team of dr’s were so impressed. I fought for my son. Sadly, my son passed away from a brain infection after fighting so hard. Some of the administration came to talk to us after my son passed and told me that they have never seen a family that took such good care of their child as we did. They also said that the way I advocated for my son was admirable. As intimidating as it can be, I think some dr’s actually appreciate the advocating because you are are so right, no one knows our children like we do. We have to advocate. There is no shame in doing so. I wish I could of prevented the outcome at the end but I know the he’s with Jesus and I will see him again some day. One day closer.
Mix and Match Mama says
Oh Cathy! Oh my word, I’m so sorry that you and your son and your family have been going through this. Praise JESUS for your mother’s intuition! PRAISE JESUS!
Shelley says
Shout out to doctors who listen to the mother’s voice – after having 4 sons with the same man, you pretty much know what your lil baby will look like, right? My baby was born with a protruding bump on his forehead – nothing awful, but it didn’t look right. The doctor that delivered him – and the other three boys said, “you’d look like that too if you just came through the birth canal” and left it at that. We live on an island in Alaska with limited medical services – and several weeks later went to California to visit my family where I lamented about this bump getting more exaggerated, and how his face was lopsided, and his ears and eyes were off center a little bit – and we all agreed that something wasn’t right. After seeing a pediatrician, he referred us to a neurosurgeon. The minute I walked into the office he said,” oh yes – he’s got an asymmetrical face”! As tears streamed down my face, this amazing neurosurgeon said, “don’t worry – I can fix it”! My sweet bundle who was only 8 weeks old was diagnosed with lambdoid synostosis and needed open craniosynostosis repair surgery. The doctor informed me that often developmental problems can accompany lambdoid synostosis and asked me “do you think your baby has developmental problems”? and I said “no”. He said, “do you have other children?” and when I replied that he was my fourth son he said, “ah! Perfect! I always believe the mother – she always knows”. The team at Oakland Children’s Hospital was amazing. Our experience there was sacred. Teams of people treating our child with such loving care! I’m so grateful for smart people who study hard in medical school! I’m thankful for the amazing personnel and teams of workers that help with the most complex medical dilemmas that can be so very sad and hard! The love and light that was inside this building was palpable! Literal ANGELS walk the halls – they just happen to be doctors, nurses, and medical professionals. xo
Debbie says
I have a daughter that has Cerebral palsy. She is now 31 years old. She had 24 orthopedic surgeries before her 18th birthday. Shay is so right. Advocate! If something doesn’t sound right ask questions. Do what Shay did call another Dr that you trust. The medical staff is human and may forget to tell you something. You know your child the best. Our biggest problem was her latex allergy. I had to ask for years anytime she had a procedure does that have latex and still occasionally we ran into a problem.
Also your child will learn from you to advocate for themselves. My daughter is great at advocating for herself.
This is a child that wasn’t suppose to be able to do much. She has a bachelors degree, works full time and is working on her masters in family therapy.
Liz Thorson says
Shay Shull, my eyes are filled with tears! You are incredible and Ashby was destined to be your daughter! This post, oh my goodness! Your shared wisdom from your journey with Ashby could not be more impressive. Here’s to you, Shay! You are a rock star! I know this post will help countless mothers and fathers to realize the power n advocating for their precious children!
Megan says
I have been a pediatric nurse for 3 years. Parents are always apologizing for asking extra questions, speaking up when they don’t feel something is right, etc. And I always always always tell them “you know your child better than anyone else. Never ever apologize for asking questions, wanting to talk to the doctor again, getting an 2nd opinion, advocating for your child.”